Maybe cancer, no results yet

Thanks for that, will do.

Hopefully it’ll be done and dusted.

Discharged on Monday, the surgeon is very pleased with how the graft has taken. Pain wasn’t too bad, helped by taking oramorph and tablets. The glans resurfacing isn’t painful at all, but now I’m off the painkillers the graft site is very sore.

I have to clean the graft three times a day by dabbing with saltwater and kitchen roll. I have to change the graft donor site dressing when it looks manky, again by dabbing with saltwater and kitchen roll. Strict instructions not to wipe, just dab.

The glans looks horrendous, but I’ve been given assurances that it will continue to improve visually for the next three months.

I’ve got a two week wait for the biopsy results to find out if further surgery is required, so fingers crossed it’ll come back that everything is clear.

The surgeon and his team were excellent, as were the ward staff, but the regime of blood pressure/temperature/oxygen every 4 hours, plus all the other noises and activities rest/sleep was definitely lacking. Getting that at home though.

Glans looks less like a penis than the outstretched head and neck of a tortoise that’s been overnight in a bonfire.

But it will get better, and even if it doesn’t, who cares as long as the cancer has been removed, I certainly don’t care.

As they say, “onwards and upwards”

Thanks for the support, it’s very much appreciated.

Well done Steve the worst is over now just concentrate on getting better. I had an infection on the graft which damaged it so cleaning is very important. I cleaned my graft as instructed but I think I picked up the infection from the hospital. My graft did recover.

As you say it does not matter how it looks the main thing is hopefully to be free from cancer. It will look better given time.

My biopsy came back and I had 3 nodes removed but they were also free from cancer so hopefully your results will be fine.

Look after yourself any get lots of sleep, we have been given another chance of life from these brilliant surgeons and their teams.

keep me informed of progress

Regards Robert.

Morning Robert,

Woke up yesterday feeling a bit like I had flu or something, and went to do the usual cleaning with saltwater regime and the shaft is about 70mm diameter, which is way not right.

Also had a temperature of 40c so now on antibiotics because I do not want the infection to go the the graft site.

The guys at St.Georges have been unbelievably supportive, with emails and photos going back and forth.

I'm now on antibiotics and wearing cycling shorts to give a bit of compression to help reduce what evidently is lymphoedema.

They said it can happen in this type of surgery but they do not seem overly concerned, so I'm not, just got to wait for my temperature to go down along with the swelling.

Temperature is already down to 38.3c and I feel normal again.

Nothing is simple is it?

Regards,

Steve

No nothing is simple but sounds like you were on top of it quickly. I have now had 2 urinary infections and I can’t pee when I have an infection so they learned me how to catheterise myself which is not that difficult especially with a small catheter. 
I also found out that my bladder can’t empty itself so I retain about 600ml seemingly you can live a normal life with this retention. As you say nothing is simple.

Robert.

600 ml sounds rather a lot. I had to prove that I could wee three times and then have my bladder checked for retention before they’d discharge me, thought I’d never get out. It was 113ml and she had to get approval from the surgeon because it should be 40ml or something. Thankfully he said okay so I escaped.

Temperature went up to 40c by Friday, but it’s now back down to 37.3c so getting there.

The lymphoedema is going down slowly too, which is also making the three times a day saltwater clean a lot better as I can at least retract it a bit now.

The glans is already starting to look a lot better and not like the tortoise head and neck....

Thank you for your continuing information and support, it’s helping me so much, you wouldn’t believe how much it does.

I have had this feed back a couple of times it is good to talk to people who have already been through the experience as it can be very frightening and daunting. I think we have been lucky as some men have had their penis removed and replaced with a tube behind the testicles which is unimaginable.

Robert 

Absolutely I feel lucky that it is what it is, still to find out about about the nodes, but it’s still way better than the alternatives.

Onwards and upwards over the next three months, which I’ve been told how long it will take to get to the final result.

Just had a call from St. George's.

They are almost 100% certain that all of the cancer has been removed, there were no cancer cells on the edge of the samples.

The lymphoedema is almost gone, and my temperature is back to normal.

I've got to go back every three months for the next two years to make sure nothing has returned.

All looking good.

I can't say enough about how pleasant and professional the whole team was at St. George's, made me feel that I was in very safe hands, and I believe I was.

That’s really good news I know how you feel being told you are cancer free.

I am also going back every 3 years, you can’t put into words what these medical teams have done for us, they have given our lives back. I had a glansectomy which involves rebuilding my glans this is a very skilled procedure which was expertly done.

I did write to the team to thank them.

You can now look forward, great news.

Robert